Tag Archives for " Lymphoma "

I’ve been getting involved in the support groups and chats through Reddit and Facebook lately. I think some of you probably know how I feel about my Facebook usage.

It’s been important for me as a survivor to start being involved. There’s a lot of people that are really confused and scared about the process that goes on after you’ve been diagnosed or as you are being diagnosed.

There are a number of things that go on when you start down this road. And there’s a lot of fear that goes on because you are jumping into the unknown. The good news is you might start getting some answers into what is going on with you. Why you might be feeling as bad as you have.

I want to share a little bit of my story about the first couple of days within my diagnosis.

The intention that it’ll help give you an idea of what to expect.

When I went into the hospital, I went in because I had what felt like gas pains. I had a cramp in my right side underneath my rib cage, right around where your liver sits. The pain came on very unexpectedly on a sunny day in November. As the day went on, it didn’t get any better and things transpired from there.

I told myself if it doesn’t get any better by the next day, I’m going to go to the hospital emergency room. And that’s what ended up happening the next morning. I woke up, and moved around, that cramp came right back.

Mom drove me down to the emergency room the following morning. That’s where my story really started to unfold. I did a CT scan of my chest area and we were able to determine that the scan of my liver did not look right. And it actually looked like a bag of bird seed. That is what the consistency looked like. Just really kind of spotty. There was no solid consistency to it.

So we end up getting me down to Saint Anthony’s Central hospital in Denver that night.

Click on the Podcast if your on the go!

That’s where everything started to get real.

Within the first three days, I had a liver biopsy, and a lymph node surgically removed under my arm pit. and by day five, the pathology came back saying I was diagnosed with Hodgkin’s Lymphoma.

My First PET Scan and Chemo

This is when I underwent my first pet scan and that was just absolutely crazy. And By day 10, my first round of chemotherapy. And that’s where my world of reality became absolute mayhem.

Over time, it got a little bit easier for me to process. I started to understand the routine and was able to move forward and learned to zone everything out. But was still dealing with a lot of fear from my own mortality. And I didn’t know how to deal with that stress. I talked counselors about what I was going though. Fortunately, there were some resources at hand to help me deal with that. So that was one of the biggest things.

I want to really focus back to the biopsy side of my experience. Some of the questions that I’ve been answering are on Reddit and Facebook about biopsies and if there painful. I vividly remember the needle going into my side right below my lower right rib.

“The liver biopsy felt like I was being stabbed, slowly”.

The surgeon taking pieces of my liver. I could feel him just in there. It was the weirdest, painful thing I’ve ever felt in my life. I could feel a little grabber is coming in and, and just grabbing and tearing pieces. The surgeon took six little pieces of my liver. Immediately after the sixth biopsy was taken, they knocked me out.

It took a little bit of mental preparation for me. Fortunately, I had a friend that had gone through a liver biopsy due to a different disease. He informed me about it and that it’s going to suck, but there’s just no way around it.

Always a mental challenge

So prepare yourself mentally to have the biopsies done.

Once I had a recurrence, I had another biopsy done. At a different place in my body.

We tried to do a bronchoscopy at first. THat biopsy is where you go through the nose. We tried to get a sample of a lymph node that was essentially right above my heart in my chest. The best way the doctor wanted to go was through my nose to see if they could get it. But because it’s in such a precarious place, they couldn’t do it.

The next procedure was called a mediastinoscopy.

They ended up opening me up in my neck where a tracheotomy would be. We were able to get a biopsy of that lymph node and confirm that my Hodgkin’s came back. Fortunately, I was knocked out for this biopsy because of the incision in my neck.

And that’s where everything kind of led down the road to my autologous stem cell transplant.

With the Liver biopsy, because the liver metabolizes drugs so quick, that is the main reason why they didn’t knock you out. And I just had to endure the pain of it. It taught me that this is something that you deal with when you’re going through cancer.

Shit Happens!

Everything that could happen, can happen. Doesn’t mean it will, but it’s good to shift that focus, mentality and that mindset into.

I got to do what I gotta do to make sure that I can get through this as quickly and is healthy wise as I possibly can.

So just remember, you’re going through diagnosis and if you have to do biopsies, just mentally prepare yourself that it’s going to suck. And if you can your mindset that way, it’s going to make the entire experience a little bit better.

You will start to feel a little more comfortable knowing that once you do this, you can move on to the next challenge.

I’ve always been kind of one to just jump in and take action to get this thing done. I want to do this now. I want to get it over with. So if I can do that and if I can make that happen as fast as possible, then so be it.

And that’s how I approached my liver biopsy.

And the rest of it for me is history. Take the time to really prepare yourself for biopsy because there’s undoubtedly a lot of fear that goes on and a lot of confusion and anger.

And I mean you will go through the entire gamut of feelings, not only because you’re going through cancer, but now you have to do all these surgical procedures that really keep you on your toes. And if you can, prepare yourself for all the anxiety’s that come up and when you’re first starting out, understand there is no easy way to approach cancer.

It’s not easy. None of it’s easy!

A lot of positive self talk, a lot of meditation, a lot of doing your best to be around people that can support you as best as you can. And I know that there are a lot of you out there that don’t have the support.

So this is where you have to dig really deep and be your own best support group. Fortunately there starting to be some more survivor and patient resources online starting to pop up, which is really good. Facebook has a couple good ones, Reddit has some really good ones too. Also, Quora is also a good place to ask questions.

So please take a look at those and ask your questions because there are plenty of people that have been out there.

Unfortunately, the medical industry has not done a very good job in helping with survivorship issues, psychology problems and other physical problems. You kind of must go at it alone, but I want you to know that you’re not alone.

Be prepared, start doing a little bit of research. You’re going to be okay and you’re just gonna fight like you’ve never fought before.

Thanks for reading and If you have any questions, hit me in th comment section below.

It’s safe to say that I was a pretty lost soul after getting out of the hematology floor at Presbyterian St. Luke’s in Denver. Of course, I was excited for the fact that I was alive and able to share my story.

The reality was a very scary proposition. I essentially came out of the hospital as a clean slate. A blank canvas.

And that was a scary thought. There was a lot of fear at the time, mostly because the unknown was laid out in front of me.

I was dealing with recurrence fears, I knew that I was having memory issues. and just the overall feeling that my health was going to be a challenge for the rest of my life.

But there was an underlying excitement. The opportunity had given me a chance to rebuild my life. The unknown gave me a chance to refresh my body and my soul.

All I knew was what I wanted and what I didn’t. The old normal was a thing of the past.

Thats when I started prioritizing the things that were most important to me. And since I used all of my financial resources to battle my lymphoma, I knew this was going to be a tough road.

Fortunately I had a couple people mentor me after my cancer experience. This started me down the path to figure out the next steps within this blank canvas.

A pattern emerged. All of them asked me one important question…

What is your “Why”? Why this question is so important

We got really deep into my psyche and battled my ego.

Why do you work? Why do you want to help people? Why do you want to start a business? Why do you want to live?

This is a pretty scary question. This question gets to the heart of a lot of what it means to be you! And when you think about it, understanding this word really becomes an all encompassing question at a very deep level.

Before lymphoma, this question and many others we’re never asked. They were never discussed. And there’s a good chance I wasn’t ready to answer those questions.

I was a pretty lost soul after all my snowboarding endeavors fizzled out. Broken some may say.

I truly believe that lymphoma saved my life. it helped me understand my purpose. It helped me define who I am.

By asking yourself “WHY” is the start of digging deep into the motives and decisions that make up everything you are and want to be. It makes you question your own psychology. All your theories in life.

Really, everything!

For most people after dealing with a life changing event or situation, it’s only natural to start asking deep-rooted questions about themselves.

The curiosity of life’s purpose!

The best way for me to describe it is there was a burning in need within myself to start understanding what my purpose in life was. I knew I wanted to help people and I knew that survivors and caregivers needed help once they got out of the hospital after their last treatment.

So for the last eight years, I’ve been slowly creating a survivorship care plan to help guide survivors through the twists and turns that they will experience in their “New Normal”.

I go deeper into this question and the psychology in my book Internal Architect. In the chapter, The 4-W’s, I hit onto a more encompassing strategy of why you need to question yourself after cancer.

I wanted a good way to explain how a life that has no meaning or purpose is supposed to sound. A life that just exists in time. And “A Sedated Life” was really the best combination of words that could explain where I am coming from.

My 30’s turned out to be a tough decade. Mostly because I was lost in a sea of reality. Out of highschool, I had the fortune to experience all the perks that come with a level of sport only most can dream of.

Snowboarding was the fastest growing sport in the world and growing up in the mountains of Colorado afforded the opportunity to meet the worlds best. Not because they traveled here, because they lived here.

Having this passion and skill set, I was accepted into this new and exciting world. It was a place for misfits, weirdos, and freaks. We learned by doing and through trial and error. We lived an amazing life!

Unfortunately, decisions were made that ended up rattling my world.

Its safe to say that I took the news very hard and ended up holding a grudge for good part of a decade and most importantly I made some bad decisions and learned lessons the hard way. Living in a mildly depressed world, drinking too much, numbing my mind with TV. There were a lot of late nights and not much self reflection. Despising a sport that gave me so much.

I had fallen into The Sedated Life Trap.

If your on the go, Listen to the Podcast episode about A Sedated Life

In 2009, I was Diagnosed with Stage 4 Hodgkin’s Lymphoma. Talk about a kick in the ol’ man parts!

And, talk about getting yanked out of the rut you’ve been wallowing in for 10 years.

Everything slowed down to a standstill. But what started to happen was what appeared to be a miracle. Self reflection started to appear, concern was peaking around the corner. And interest in life became decisive.

For the record, I’m no expert. But I’m pretty sure how cancer became such an influential part of my life.

Here are 10 examples to why lymphoma became a defining moment in my life.

1. Anger

Holding a grudge is one of the most hurtful and painful things a person can do to themselves. Mentally this wreaks havoc on you.

What this does to your body physically is it raises your stress hormones.

These hormones, Adrenaline and Cortisol, suppresses your immune system. Anger and resentment are the two emotions that drive your stress hormones.

Think about this, if you are angry and carry resentment for a long period of time, all your doing is suppressing your immune system and causing your body unnecessary stress that can lead to Cancer.

2. Diet

For that 10 years or so after feeling totally betrayed, my diet consisted of very poor decisions. Fast food, high carbs and high proteins. Large portions.

I gained a lot of weight. I’m 6’2″ and at my heaviest weighed 238 pounds. I was a big kid! I would eat four to five full meals a day. Most of the time I would eat 2 lunches.

I never ran the numbers, but I’m sure I was spending thousands of dollars a month on food. My body couldn’t handle the intake of so many calories. it was stored as fat.

3. Alcohol

I was never a drinker in high school. Mostly a straight laced kid with professional ambitions.

When I turned 21, it was an opportunity to socialize with all my friends who were mostly three to four years older than I. It was an exciting time and a lot of memories made and forgotten. Being on tour had its benefits.

For a couple years, Bud Light was the tour sponsor and I traveled with a souvenir skull mug I got in Las Vegas for my 21st birthday. Lots of snowboarding and lots of beer.

This behavior never stopped and I never learned what moderation was. This ended up leading down the road of depression drinking after snowboarding fizzled out.

It turns out that Alcohol affects your body in more ways than thought. Aside from feeling like pounded shit he next day, how it effects your metabolism is most interesting.

In a nutshell, it prevents your body from turning your fat reserves into fuel. Since Alcohol has no nutritional value and is considered a toxin, it suppresses your body’s ability to properly Metabolize food into energy.

4. Exercise

Throughout all my competitive years, the one thing that was always consistent was the amount of exercise I was getting. Hiking the half pipe, practicing the routine I wanted to use in the weeks event to hiking a jump to shoot a photo for advertisements or editorial work.

I was active everyday, all day long as hiking was part of the daily routine. Even though I was probably drinking a lot of beer then, the exercise helped balance it out. Pure caloric burn.

As this world changed, so did my activity habits. Having an injury didn’t help either. Afterwards, I was more inattentive and all my other habits lethargic.

I’m pretty sure that was a contributing factor to the Hodgkin’s I would eventually be diagnosed with.

5. Complacency

Ooo man, there was a part of me that was smug and felt entitled. See, I was given everything when it came to my snowboard world. Paid to ride, free gear, and even traveled the world. Everything was taken care of.

For about an 8 year period, I lived and breathed snowboarding. But it didn’t teach me anything about what life would be like after. Wasn’t even open to learning any skill sets to prepare me for the inevitable. I was living a complacent life.

After the crash, my lifestyle was mostly self destruction. Kind of like burning the candle at both ends.

I was lazy and stuck in a rut which at the time, was so deep and daunting, gettingout seemed to big of a chalenge.

6. Self Concept

The goal of Self Concept is to understand the roots of who you are. To ask yourself questions about what your all about. Who am I right now? Defining this question really helps the foundation on why you do what you do.

I had no Idea what Self Concept was before I was diagnosed. If I was to create a pre-lymphoma Self Concept, It would look like this.

I was an angry, overweight, washed up professional snowboarder that felt like the industry was out to punish me. Having now Idea that my own mentality was the cause of all my mental pain.

7. Assumptions

I was taught to assume a lot of things before Lymphoma. I always assumed that I would have a career inside the snowboarding industry. I assumed that all my travel and experiences would count towards A life where money wasn’t an issue. I assumed that I would be paid at the highest rate because of my experiences. I assumed that my relationships wouldn’t fail because of my experience. I assumed that I learned all the necessary skills to be able to carry-on a life that was exciting and filled with adventure.

I was so very, very wrong.

Assuming so much set me up for the world’s greatest crash and burn! I have no excuses now that I’m able to look back. Only the knowledge that I’m not going to allow myself to assume that anything will ever be given to me. Ever! You have to work for it. And you have to go through the experience of building to understand the process. You know what, I’m just going to say it now.

Assumptions = Failure

8. Search for Identity

For years I struggled with understanding what it meant to have an identity. I’ve been on multiple sides of what this meant and what it meant to me.

There’s a point within all the traveling and snowboarding work that I didn’t really feel I had a true identity. I knew that I was a snowboarder, I knew that I was from Colorado. I knew that I had a family and friends. I knew that I had sponsors. And looking back at this period of time, I had no clue what this meant.

There was a cartoon I’m sure some of you remember called Beavis and Butthead. For some reason I Found this cartoon to be incredibly intriguing. And so did all my friends. The joke was to laugh like Beavis or Butthead. There was a point I took it way too far and essentially became that character, at least in my own mind. I remember a moment snowboarding in Austria and I did the Butthead laugh over something really dumb.I had a realization moment. “What the hell am I doing”?

It could’ve been the marijuana, it could’ve been the drinking. But I’m gonna say it was all the above and at a young age, I was still very susceptible to outside influences.

Fast forward about 5 years. I was injured, depressed and really felt like my life was over. My family was concerned. I was definitely at a low point in my life. Everything that I knew, even the mentors that I trusted was all thrown into a big boiling pot of Betrayal.

Here’s the kicker, I didn’t know what my Identity was and wasn’t open or allowed myself to take this experience, treat it as a failure and grow from it.

9. Feeling of Belonging

When your depressed and drinking a lot of alcohol, the tendency is to associate with others that are like minded. You talk about your sorrows and life’s frustrations. You’re looking for someone that will listen to you and feel like you have something in common. That feeling of belonging is natural feeling no matter where you social fit in. Everyone wants a friend and someone to relate to. Finding people in my shoes within snowboarding was easy. There was a lot of us that felt like the rug was ripped out from under our feet. The conversations were mostly drunk and bitterness towards the world that swept us underneath that thrown out, ripped up rug.

Even after my lymphoma diagnosis, I was really yearning for a relationship with someone that could understand my pain and vulnerability. Even find some resources on line to help with that fact. Nothing…

A lot has changed in the 9 years after my Lymphoma diagnosis. The feeling of belonging mostly comes from my family and my friends that have been by my side since diagnosis. Relationships have come and gone. Eve lost a couple people.

Ultimately my self reliance into understanding and becoming a better version of myself has gained the support of the people I care about the most. This has helped fulfill my need of belonging.

10. Mindset

This was a game changer! Mindset is talked about in the personal growth world and the term is thrown out loosely as a way for gurus to help sell their shiny object. The truth is, your mindset is one of the keys to helping you open the door for conscious growth.

Once it was explained to me, there are only two real mindsets that contribute to all the decisions that we make throughout the course of our life.

The first is the fixed mindset. It is based on the belief that your qualities are carved in stone.

And the second is the Growth Mindset. This mindset is based on believing you can cultivate your qualities through your efforts and actions. Essentially planting seeds.

There is no doubt in my mind that after snowboarding, my mindset was in a fixed position. I played the victim for many years and didn’t allow myself to accept my mistakes. Not only was I not open to taking the action needed to better myself, I wasn’t even open to doing anything positive period.

You hear the term hindsight is 2020 because as you’re able to look back at experiences and situations that you survive through and take that knowledge when moving forward. That’s what so nice about using history to not repeat future mistakes.

Now What?

I’ve been able to reflect a lot on the mistakes and decisions I made before and after lymphoma. It’s taken a lot of work and I a lot of discipline to get to where I am today. Ultimately my biggest motivating factor is to never experience the feeling of chemotherapy ever again!

Please remember this is my opinion as to why I felt Hodgkins became a big part of my life. In my search for answers, I really needed to look within myself and dissect my life up to my diagnosis.

Little did I know the path this took me on would be forever life changing!

My question to you is…

What are you doing now to never experience Lymphoma treatment like you went through? Hit me in the comments below…

What is Self-Concept?

Well were going to dive into a little psychology and start getting to some of the roots of who you are and what you want your purpose in life to be. All while trying to find that ultimate peace that we’re all looking for. And this my friend, can mean a lot of different things to us Lymphoma Survivors.

Ultimately, the topics I’m going to discuss are really just some simple tools to help you find what it is that you’re looking for.

So, to start gaining insight into The Self-Concept, It’s time to start asking yourself some questions. Were going to start with 5 important questions you must ask yourself. Now, these five are not the only questions to ask, just a good starting point. There are dozens of similarly base questions that can help you round out the exercise to start creating the baseline of your Self Concept.

Grab a sheet paper and a pen. Take 5-10 minutes for each question and write down everything that comes to mind. Be honest with yourself. There is no wrong answer!

If your on the go, Check out my Podcast of Self Concept below!

5 Questions to Start Defining your Self Concept

1. Who am I?

This question is to start adding framework and begin defining your background.

I like this question because it make you take a look at all the parts of your life that has essentially made you who you are today.

To help answer this question, you can ask yourself additional questions like, Where did I grow up? What was my family like? And what kind of background do you have?

I’ll use myself as an example…

“I am a husband, a stepfather. I am an a retired professional snowboarder, excavation contractor by trade, waste water service technician. The founder and director of a legitimate non-profit. A business owner and a Hodgkins Lymphoma survivor. I grew up in the mountains of Colorado in a loving blue collar family.”

I write pretty in-depth about this topic in my book Internal Architect. The chapter is called the Four W’s and it dives into the roots of who you are and what it is that you want to be. In this self-concept, questions like “Who am I” really starts to get at the core part of who you are. By asking yourself questions like this you start to break down the things that are going on, not only in your life, but in the surrounding parts of your life as well.

2. Who am I RIGHT now?

What I want you to start thinking about is Who Am I Right Now? What are the things that really make you, you? These are really important questions to ask yourself as you start trying to define what your self-concept is. Because once you understand that, I can help you move forward into the other aspects of the Internal Architect Concept and learn how to build an understanding, not only to find inner peace, but how to find whatever it is that you’re ultimately looking for!

Lets see, My example is this…

“I am a dedicated husband and Stepfather. Snowboarder/Split-boarder in the winter and Mountain Biker in the summer. Business owner and employee. I am a teacher, mentor and survivorship life coach in both my work and personal life.”

By defining these first two questions, the framework is being created to move forward in understanding your purpose!

3.How do you see yourself in the future?

In the video above, I ask two questions. The first one is “What do you do for work”? I asked this question because it’s important to understand where you’re at in this moment of time. The second part to this question is “what would you “like” to do for work”?

Those two questions separate the now and the future. The “Now” sets the base line for where your at. And the “Future” is where you really want your efforts and energy to move you towards. By knowing and understanding that question in itself will help you define what it is that you want to accomplish and what it’s going to take for you to get there!

I like using what we do for work because it is that one activity that we must do in order to live in this modern world and have a feeling of “comfort and safety”. We may not like our “JOBS”, but as long as we know what we want, we can look at the work we do as a means to achieving our goals or desired outcome.

4. What is your social life like?

Do you have a lot of friends or are you really reserved and a bit of a hermit? Are you outgoing or like to volunteer for things you want to contribute to? Beginning to understand your social life helps start defining how you’re going to work towards finding that piece that you want. It’s also going help you understand what it’ll take to surround yourself with people that you probably should, and learn who you shouldn’t be surrounding yourself with.

Do you socially drink? Do you enjoy happy hour? What do you do for hobbies? Do you enjoy sports? Questions like these will continue to help define how you spend your most valuable asset, Time!

Which leaders me to question number five…

5. How do you spend your free time?

This is also an important question because if you are spending your free time, say watching TV, or if you’re on your phone engaging in social media or playing games. This tells me that you might be wasting your valuable time that could be used to do something really good and adding value to yourself and others in the future.

The one good thing about our mobile devices is most of them have a feature that observes and defines the usage of time on your device. On iPhones, it’s called Screen Time. On Android devices, it’s called Digital Wellbeing. Highly suggest checking the software out and start using these features to help understand just how much time you are spending, or waisting on your phone.

I go a lot more in-depth with these questions in my book Internal Architect. Click Here if you want to pick up a copy from Amazon. It’s important to really start thinking about the broad picture of what you think is important.

The reason why I ask these questions is to help create a baseline for where you’re at in life, at this moment in time. From here forward, the choices can be really simple or really difficult depending on what your Mindset is. What it is that you want to do? Being able to look back over time and see the progress that you have made on these goals and these challenges you are working on really is important. Over time you’ll learn to about keeping yourself accountable.

I personally have been given a second chance and I’m gonna make the most of it. The Lymphoma Experience has really given me an increased sense of purpose and peace in my life than anything else that I’ve done.

Now, Where to begin…

Took me a little time after cancer to really start feeling comfortable with what I considered “the new reality”. Cancer really shattered that collection of believes that really defined who I was up to that point. A lot of it has to do with “Facing your own mortality”.

I like getting myself into a really quiet space and and putting some reflection time into who I am and where I’m at right now. I do this pretty frequently just to help keep tabs on the metrics I’ve created for myself. Over time, this has really made a big dent into my life approach. And slowly finding that peace that I want. This approach has really helped a lot of other people in the path of finding their purpose and defining their own peace.

And that’s the good thing about cancer, is it forces you out of your Comfort Zone in unthinkable ways.

A number of survivors that I’ve talk to have struggled with their self-concept as they are unsure of what to do next. Having no real direction as a survivor. And that could lead you down the rabbit hole of Assumptions.

I am a firm believer in writing ideas and conversations down that are going on in your head so they are visible. And writing down The collection of beliefs of who you think you are is a great place to start when understanding the feelings and emotions you go through as a Survivor! I have stacks and stacks of notes and writings I created just to work through the internal conversations that I had and continue to have.

I am not what you consider a medical expert, just a common guy that’s survived stage 4 Hodgkin’s Lymphoma. These are my views and opinions and should not be considered medical advice. Feel free to leave a comment below and ill respond ASAP!